My name is Amanda, I'm 25 years old and have recently been diagnosed with Cluster Headaches. I have to say, after reading everything on this site, I'm one of the luckier suffers so far! (if there even is such a thing...)

I started getting attacks when I was about 16 years old - at the time my GP sent me for all the regular CT scans, etc. and nothing came up, but it never went any further because they stopped. Had a few attacks on and off through my later high school years and into uni, but again never long enough to really do anything and there would be years between - I would only get one full on attack every now and then, seemingly randomly. Of course, not knowing what they were at the time, I never though to look at whether the attacks were coming the same time through the years...

This year has marked a different pattern in my headaches. Back is February is the first time my right eye joined the party, but nothing else came of it until September. Since September, I have been having what you guys appear to call "shadow" headaches daily, to varying degrees of pain. Throughout these 3 months, I have only had 2 full on attacks that were mercifully on 3 - 4 minutes long. I take my hats off to all of you who suffer through much more frequent and many more full on attacks because 3 - 4 mins was enough for me!

After many GPs diagnosing me with migraines (and I swear, if I hear one more person recommend I get my eyes checked or take Pandine Forte, I will scream!) I finally found a GP who gave me a referral to a neurologist. The first thing she said to me was that it sounded like CH, which I had already suspected myself, after stumbling across this very site! The relief of finding a description of my pain that someone actually understood was indescribable, made only better by the recognition from the neurologist!

Given that much of my pain is coming from shadows currently, with infrequent and short full on attacks, I'm currently working with preventatives, namely verapamil, as my attacks aren't long enough for me to even get to any abortives, let alone for them to help. I have recently increased my preventative meds and for the last two days have actually had a few pain free hours in succession - I'm almost too scared to get relieved yet!

SO that's my background! I'm from Sydney, Australia, so hi to any other Aussies on here! I'm so glad to have found such a great supportive network because as I've seen so many of you write - no one can understand the pain unless you experience it!

Hope to speak with you all on here when I manage to pop on, and get to know you all a little better!

Here's a piccie of my and my boyfriend of 5 1/2 years, who has been wonderful, despite getting slightly freaked out when first witnessing a full on a attack a couple of weeks ago!

Hi Amanda, Welome!

The eye pain is definitely a sign of cluster, even without the headache. I started with eye pain for about a month, then a few massive headaches here and there over the next couple of months begore settling into any kind of pattern. It's great that you have a diagnosis at this point so you can get right to addressing the pain. I urge you researh this site as muh as you can. Many here have been through the available meds and can provide insight on what works well, what doesn't. There are also some methods for immediate relief that you won't find at the doc's office.

Hoping for pain free days for you. -Chris

Hi Amanda & welcome to the best little nut hut this side of Mars.
Something worth a try as a quick easy abortive for low level hits any energy drink high in caffeine & taurine, Red Bull, Mother etc.
Keep them icy cold & handy & slam the can down the throat as quick as you can without choking, it's very effective for a lot of us, I can kill a Kip 5-7 within a couple of minutes.

Cheers Barry up north on the Western side, not to be confused with Brian up north on the East side.

Amanda07 wrote on Nov 28^th, 2010 at 9:36pm:


60mg is a very low dose for verapamil as a preventive for CH. A dose of 360-480mg per day is pretty effective for a lot of people although some have gone to over 1000mg per day. For me 360mg did fairly well but 480mg is a huge improvement.

It can also take 10 days or so for your body to adjust to the doseage you're taking, so trying it out for just 2 weeks is not likely to be too useful.

For the antidepressent you mentioned, it sounds like you're thinking of amytripline which has been used as a preventive for CHs.

Hi Amanda and Welcome!

How to deal with work and ch you ask... "One day at a time!" 
A proper prevent such as verapamil, and abortive(s) imitrex shots and O2!  Also it doesn't hurt to print out this Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and hand it to your HR dept and your supervisors.

Have your B/F come here too there are things he can do to not feel so helpless when you are getting slammed by the CH Beast.

Wishing you many PF days and nights!

Welcome to the board Amanda, I'll second the advice on the oxygen. You can keep an E-Tank at work with you, they can be hidden real easily in those bags they put the "soccer mom" chairs in. You feel an attack coming on at work, you sneak into a back room, huff 02 for 10 minutes, not even a full coffee break!!!, CH is gone and your back at work. I recently retired from law enforcement, used to keep an E-Tank in the trunk of the cruiser while on cycle.

A decent prevent helps a lot too, cuts the number of hits way down.

Keep reading and learning, educated CH'ers hurt a lot less!

Joe

Welcome,as a night hitter myself I swear by the Melatonin.
10mg an hour before bed and I have yet to have another night hit (3 months) Give it a few days to work it took me 2 or 3 days and I haven't looked back since.

Good Luck

Delighted your attacks are so infrequent, Amanda. But, not trying to throw cold water on your optimism, may I respectfully draw attention to this:

Quote:


This is good news, as I said. BUUT...should they increase in either frequency or strength, please do not wait a moment longer than you feel you need to wait...these things are much easier to deal with before they take ahold and hit full cycle. The more and the faster you abort them, even little ones, the better.

In the meantime, I have it on good assurance from the Man in the Moon that the nuthouse on Mars is 5 star! See you there? God bless.  lance